Soliris (19)
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 SolirisCurrently an aHUS patient using or considering treatment with Soliris? Please add your voice to this Forum!Several members of this website… Started by Linda BurkeLatest Reply |
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 Post Soliris and/or Post Transplant by the numbersI know most of our "numbers" are posted in various Forums, primarily under "Soliris", so one of our goals will be centralizing the number… Started by Bill Biermann |
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Jan 31 Reply by Cheryl Biermann |
Is there such a thing as "Atypical HUS Free" or "Remission periods"Hello All, The Foundation and the Scientific community are currently wrestling with the following topic: DOES ATYPICAL HUS GO INTO REMI… Started by Bill Biermann |
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Jan 31 Reply by Cheryl Biermann |
SolirisCurrently an aHUS patient using or considering treatment with Soliris? Please add your voice to this Forum!Several members of this website… Started by Linda Burke |
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Jan 30 Reply by Cheryl Biermann |
 UK aHUS PatientsAt such a crucial time in the UK with regards to getting funding for eculizumab it is important for patients and their families to do as mu… Started by Lisa Barker |
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Jan 27 Reply by Len Woodward |
Seminar at House of Parliament Jan 17thHi i was wondering if anyone who was attending this had received their invite yet? Started by Lisa Barker |
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Jan 20 Reply by Cheryl Biermann |
 Taking the dread out of the hospital visitsHi, After speaking with one of our parents, I thought, well this would make a great forum for new parents! Who else has suggestions in m… Started by Cheryl Biermann |
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Jan 18 Reply by debbie thelwell |
Soliris side effectsHappy New Year everyone! I have a question about soliris...I'm wondering if anyone has seen a significant change in hair loss. My sister st… Started by Jessica Rios |
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Jan 5 Reply by Cheryl Biermann |
Protocol for Treatment of Atypical HUSI wanted to describe in a "decision tree format " the thought process used to treat this disease. (Disclaimer first: Atypical HUS i… Started by Bill Biermann |
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Oct 29, 2011 Reply by Bill Biermann |
Patient SurveyI have been asked to try and find any patients or families of aHUS sufferers who are willing to complete a patient survey to help us in our… Started by Lisa Barker |
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Oct 8, 2011 Reply by Len Woodward |
FDA Approval for Soliris - Rejoice !!A heartfelt thanks and gratitude for all of the hard work and dedication exhibited by the staff of Alexion. Their vision made the dream… Started by Bill Biermann |
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Sep 23, 2011 Reply by Cheryl Biermann |
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.
Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.
NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "About aHUS" tab at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.
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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.
Did you know...
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It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
Help us fight the battle
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.
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